Will I keep getting my Personal Independence Payments?


I’m angry. I’m so angry it woke me up this morning. And I’m angry about being angry because I can’t channel the anger into anything productive because I can’t do anything productive. I am powerless to stop being ill and I am powerless to stop being angry.

Being disabled is infuriating. Something that happened to me and was beyond my control has left me like a machine that’s been switched off – disabled – unable to do anything that a 21-year-old of my intelligence and interests might want or need to do. I have been sick for almost half my life, and housebound for the last four years. But that’s not the reason I’m angry.

At some point in the near future an agent from Atos will be reviewing ‘how [my] health condition or disability affects [my] daily life’ so that a ‘decision-maker’ at the Department for Work and Pensions can say whether or not I’m still entitled to Personal Independence Payments. It’s not enough for my doctors to write letters saying that I have a chronic condition and there’s been no meaningful change since the time of my claim 28 months ago. The date of the appointment has been changed four times in four weeks, sometimes with less than seven days’ notice, presumably because disabled people don’t have lives of their own. Exactly what kind of ‘independence’ did they have in mind?

I would like to ask the Atos agent if s/he likes her/his job, whether s/he does anything else besides interrogate disabled people, and why s/he thinks a 21-year-old would lie about not having been well enough to see anyone but their care workers, health professionals and mother since 2015, but I won’t. The DWP’s letters are aggressive, in an understated way, with the result that I don’t feel secure asking the Atos agent questions or even putting my name to this piece.

Most conventions and laws and declarations on human rights agree that I have a right to life, and a right to be as healthy as I’m biologically capable of being. Supposedly, I also have a right to keep my life private. These rights are qualified in this country by a mean and punitive government that would prefer it if unemployed people and displaced people and disabled people didn’t exist – supposedly with the mandate of public opinion. I’m not ‘sleeping off a life on benefits’ (if only: being disabled is tiring but also physically painful, and it’s hard to sleep when you’re in pain) but perhaps my Tory-voting neighbours think that I’m stealing from them. They earn enough to pay tax and I’m sick enough to claim benefits. Actually, welfare. It isn’t a perk. Welfare payments are what you claim to keep you housed, warm, clothed, fed, safe, alive.

PIP is meant to compensate disabled people for the added financial cost of living in a world that doesn’t make room for them. If I ever get to see the Atos agent, s/he will ask me several pages of questions about how my life is affected. The Atos agent will come to my home because I’m too unwell to go to the private health centre s/he uses – that isn’t sufficient evidence of how I’m affected, because I could be faking. To access my right to this welfare payment I am required to prove my life has been devastated, presenting it as a collection of medico-historical facts about all the things I can’t do, which reminds me of all the things I might have wanted to do and makes my existence sound abject and pitiful. Having abased myself, I will, I hope, continue to receive the playing-field-levelling amount of £76.90 per week.


  • 2 June 2017 at 12:59pm
    SuZ says:
    Very sorry to read this. I recall Amber Rudd looking into the camera in the debate the other night and telling us that the Tories care passionately about the poor and disabled. But when JC quickly reminded her that they’d savagely cut disabled people’s benefits she snapped back something to the effect of: “Well we”re not going to pay for everything, unlike you!!” Just an embarrassment. Hopefully, we'll soon have a government that won't be targeting you to atone for the sins of the bankers, Anon.

  • 2 June 2017 at 6:09pm
    Herbivore says:
    Thank you for writing this.

    I've been ill for 20 years now. Fought several battles to get Disability Living Allowance and won those battles.

    I'm now nervously waiting to transfer to PIP.

    I live with a rare illness called Behçet’s syndrome. I also have osteoarthritis in my spine now.

    I can guarantee that the ATOS agents won't have a clue about how disabling my illness is for me. Indeed, it took years to find a rheumatologist who diagnosed Behçet’s and understood all my disabling symptoms.

    Even now, I'd be back at work tomorrow if I could. I loved my job as a radiographer & was good at it too.

    I wake up in pain and go to sleep in pain. I am always tired and don't sleep properly at all due to pain.

    I was misdiagnosed for 12 years which left me housebound and bedbound.

    Today, I'm lucky in that I can get out.

    I can afford a car because of the DLA.

    Without a car I would be housebound.

    Even when I do go out it's only locally. If I can't park close to where I need to get to then I have to give up and drive home.

    Being ill every day is no fun whatsoever.

    I shall just have to do my best when it's time for that dreaded ATOS interview.

    My Consultant Rheumatologist has at least offered to write a supporting letter.

    In the mean time, every day when the postman puts something through the letterbox, I take a deep breath and hope that it's not a DWP letter.

    • 6 June 2017 at 5:19pm
      infer says: @ Herbivore

      Thanks to you and Anon for sharing your stories. I'm so sorry to read about your illness and the struggle just to get diagnosed.

      It's great that DLA has enabled you to get out and it's important in changing social attitudes for people to know the positive difference welfare can make. Even though it can't solve the problem it can make life that much more possible. 'Welfare dependency' is a pernicious myth.

      I hope the transition to PIP goes more smoothly than anticipated. Good that you have the support of your consultant. Any OTs, GPs or social workers who could also write on your behalf? Maybe you could ask someone to be with you during the ATOS assessment for moral support and to help you get home afterwards. Best of luck xxx

  • 2 June 2017 at 7:37pm
    streetsj says:
    I'm sure I will be corrected where I'm wrong.
    I seem to remember that the number of "disabled" began to rise dramatically under Mrs Thatcher and is was a ruse to bring down the headline unemployment numbers.
    The absolute numbers of "disabled" do seem to me literally incredible. Nearly 20% of the working population is said to be "disabled".
    So it seems to me it must make sense to get to the bottom of this. Of course that doesn't mean people should be treated disrespectfully or poorly. But it does probably mean everyone needs to be treated the same - so doctors' letters won't do.
    Herbivore and Anonymous have every reason to be cross and angry and frustrated at their disability but if the government can focus the payments on the genuinely needy then (hopefully) they could be increased substantially.

    • 6 June 2017 at 5:21pm
      infer says: @ streetsj

      Disability and long-term sick are no longer the same welfare payment, as they were in the 80s - now PIP and ESA respectively (someone on PIP may be in work and doesn't necessarily get ESA and vice versa). That dlf 19% stat is 9 years old. The author says they are 21 so clearly not a casualty of Thatcher's unemployment fiddle. The claim process is inherently disrespectful because it starts from a deficit-based perspective. The number of fake welfare claims is minuscule - there are lots of 'genuinely needy'.

      To 'get to the bottom' of the high disabled rate would be better achieved through heavy investment in social services to conduct strengths-based interventions and support people to fulfil their potential, and then accepting that lots of disabled people are actually disabled and that money might be better spent on medical research. We also might reconsider our social definition of disability and the language around it (the benefits system certainly can make a person feel invalid). Chances are someone housebound has a much smaller carbon footprint than a property speculator or someone working in retail. Perhaps the 'disabled' person's contribution is of higher social value even if they aren't so useful to global capital. Also you should reconsider your assumption that somebody made redundant by the destruction of their industry and community wouldn't suffer debilitating psychological distress and 'genuine' need, and as we know mental healthcare has never been adequate.

      Don't kid yourself that bureaucrats are going to be more consistent than doctors. ATOS quit their ESA contract because they weren't up to it. Doctors have the person's wellbeing in mind which should be at the centre of the welfare system rather than DWP targets. ATOS assessments cost more money than they recoup and the whole punitive process causes excessive stress to people who are disabled/sick which exacerbates their conditions and makes them less able, which is why large numbers of eligible people don't claim at all. It's fundamentally wrong to have created a system in which people are too sick to be able to go through the claimant process. It's not necessarily a question of increasing the payment values but changing the system so that it actually accommodates the reasons people have to claim in the first place.

      We're all just one drunk driver or blind corner away from being wheelchair-bound and you can't know how you would feel if you were caught up in this system so you should take seriously the experiences of people who are. Not wishing to be rude but your response is somewhat callous. The next time you're sick in bed with flu/similar imagine that your life is like that all the time and try reading through the PIP form - you can request one at This might give you some small idea of what it's like. And consider yourself corrected.

  • 3 June 2017 at 8:49am
    IPFreely says:
    I saw Ken Loach's latest on Christmas Day. The scandalous treatment of people with conditions such as yours is basically caused by the use of what the tories like to call "modern management tools" which keep a tight control over the case workers, gives them targets to achieve and sanctions those who don't produce. The "service" to the individual is a "product", the receiver is a "case". Is there a help group that can advise you on the best way forward? If not, there should be!

    • 3 June 2017 at 10:36am
      whisperit says: @ IPFreely
      Unfortunately, due to my own circumstances, I know of many people at the receiving end of the PIP/ESA process and can confirm that "Daniel Blake" is no exaggeration. Most recently, a friend was turned down for ESA. She was outraged that the ATOS evidence appeared not just misleading, but flatly misrepresented the evidence that she had provided at her interview, and she was determined enough to take it to an appeals tribunal.

      This took over 6 months, and during the tribunal, the presiding judge put it to her that her claim that she could not walk 20 metres "repeatedly" was demonstrably untrue, as she must have parked her car more than 20 metres from the tribunal venue and was surely intending to return to it after the hearing was over. The tribunal doctor then asked whether, since her joint pain was exacerbated by uv/sunlight (common in lupus and related conditions), could she not walk where she needs to go at night rather than during daylight hours?

      My friend later described the whole experience as "hideous" and confusing, designed to make her feel like a fool, a fraud and to shame her into withdrawing her claim.

      The only assistance she had with what is a complicated process came from the CAB - who were unable to attend the tribunal.

      This is the reality of "targeting those most in need". They are targeted alright - but not for help. Rather, they are the soft targets, precisely those people least able to defend themselves in a process designed primarily to reduce government expenditure.

    • 3 June 2017 at 1:50pm
      IPFreely says: @ whisperit
      I hope you don't think I am trying lecture you, but seems to me that only through raising public awareness can you ever expect to experience any change in officials' attitudes. Support from people with the same problem could help but that is probably a question of how I use my limited energy to get through the day. Many of the investigators have been retrained to fill in ministry forms and have no clue of the medical consequences of certain disabilities, as your friend discovered.
      The German system to evaluate the claims of refugees has been found to be grossly inefficient as up to 60% of the claims have been found to have been falsely filled in. The investigators have been given a few weeks training and then decide on the fate of whole families.

    • 5 June 2017 at 8:48am
      whisperit says: @ IPFreely
      Thanks. And please don't worry - I'm afraid I was the one sounding like a lecturer!

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